Autism: Then and now

Mike Coates, the youngest of three boys, was fine until he was 18 months old. Then he started exhibiting strange behaviors.

He would go to a lamp, twist the bulb and look at his fingers for a long time.

Mike Coates at age 13. (Provided by Judy Schwanz)

Short sentences he already knew how to say, like “Tie my shoes,” condensed to “Tie shoes.” Soon, he quit using words altogether and would just stand there, staring at his mother.

The story will sound familiar to any parent of a child on the autism spectrum — now one in every 68 children in the United States. But Mike’s sudden transformation came in 1977, and his mother was at a loss.

When the Bradenton boy was diagnosed with autism, one in 10,000 children were identified with some form of the disorder that affects the brain’s normal development of social and communication skills in the first three years of life.

Even four decades years later, talking about it makes Judy Schwanz tearful.

“I slowly watched him die before my eyes,” she says.

At the time, she remembers, theories about the origins of autism tended to blame mothers, for being “cold” and withholding their affections. Much has happened regarding attitudes and treatment since she and Mike started their journey. Most important: Autism is no longer something people have to deal with in isolation.

“Before, nobody knew about it,” she remembers. “Now, if you say autism to someone, they have a friend or relative with it.”

When she first took him to her family doctor, he said, “Michael is the baby of the family, and sometimes the other kids do the talking for him, so maybe don’t panic right now.”

In retrospect, Judy observes, “You can’t blame the doctors; they didn’t know much about autism then.”

As Mike’s behavior worsened, the family doctor finally said the words: “I think it’s autism.”

A SEARCH FOR HELP

A pediatrician took the boy through a battery of behavioral tests and confirmed the diagnosis. Further tests at Shands Hospital in Gainesville showed no abnormality in brain wave activity, however. In fact, the doctors thought Mike was quite bright.

During the visit, she watched other autistic children — toddlers to teenagers — from behind a two-way mirror and learned some behavioral techniques to help her cope with Mike’s outbursts.

The Coates boys during a trip to Disney World -- Dave, Mike and Phil. (Provided by Judy Schwanz)

Public schools were not allowing autistic children in classes at the time. The only way to get help was to have them declared “retarded,” Judy says. Doctors recommended a Montessori school, but he was too disruptive in class — slapping his hands, jumping up, screaming and making noises — so he could no longer attend.

For a while, he went to Beneva House, primarily for hearing-impaired children. The staff tried to teach him sign language, but Mike had too much energy and couldn’t sit still.

Teachers recommended putting him on the drug Ritalin to calm him down so he could learn. While it pacified him, the side effects were troubling.

“He would be like a zombie and rock, rock, rock,” Judy recalls. “I didn’t want my child to be like that, just to appease people. I wanted to find a way to communicate with him.”

She found out a about an experimental behavioral modification program at Happiness House (now Easter Seals). The techniques worked — for a while.

“Things like fluorescent lighting and certain clothes fabrics would set him off. Back then, no one knew that they could cause the kids to have fits,” Judy says.

It was difficult at home, too. Her husband couldn’t take it anymore; there was a divorce. It was hard on her other two boys, too.

“Kids can be very cruel; so can adults,” Judy says. “They would say things like, ‘Your brother is stupid, a dummy . . .’ ” Other parents wouldn’t allow their children to play at the Coates home. Judy would call them and say, “What Mike has isn’t catching, and maybe your kids would learn something — learn to be kind.”

When her older sons started failing in school and coping with Mike became increasingly difficult, the family physician told her she had to find another place for him. Judy is still upset about the way he asked her, “If you have gangrene in your leg and the doctor said that you would die, would you have it amputated?”

Unlike others, Judy has never given up on her son.

Around the time he was 12, she heard about a new school for autistic children in Tampa. Living in a group home there with others like him made Mike more comfortable and helped him to control his anger. Judy would visit every weekend, and he would come home for holidays.

Mike graduated as a high school student from the autism program. From there he went to a MacDonald’s training center and continued lived in a group home. But Judy felt the programs there were for people with all kinds of disabilities and didn't help him very much.

When he was 25, Judy enrolled him in the Pyramid School in Tampa.

“The programs there were a lot better,” she says. “They started Michael in a cooking course in which he learned to make sandwiches.”

A DESIRE TO HELP

Mike is 44 now and still lives in Tampa. When he visits, he and Judy cook together and play mini-golf.

Judy Schwanz watches her autistic son, Mike Coates, as he works on a jigsaw puzzle at her home. Mike is able to complete puzzles without looking at the photos on the box. (STAFF PHOTO / MIKE LANG)

In the meantime, she has become a tireless advocate for families with autistic children. She has taken courses about the disorder at Florida State College and has read just about every book on the subject.

For the past two and a half years, she has been working on getting the Autism Family Center of Florida in Sarasota off the ground.

She has gotten a 501 C3 designation for the organization and is looking for a permanent space.

“Families need a place to go,” she insists. “I have lived it; I know what parents feel. I remember when we went to dinner, I would wind up in the car with Mike because he would act out and carry on.”

She wants the center to have a cooking school and a small deli where parents can bring their child and have a sandwich.

“No one will be judging them,” she says, “because the people waiting on them and clearing the tables will be autistic.”

There also will be a multisensory room where children who have a meltdown can go to calm themselves. She wants to install a small movie theater, too.

“It’s all geared to creating a place where autistic families can enjoy each other’s company,” she explains.

“I wish they'd had something like it when Mike was little. But I can help create one now — a place where families can go, where autistic children can have fun; and where the older people, through sheltered workshops, can learn a trade which will lead to maybe earning a living.”

RESOURCES

■ The Autism Family Center of Florida,pathwaysautism.com: The new Bradenton-based group plans “to create programs to help people affected with autism learn valuable skills in order to lead a productive and independent life.”

■ Face Autism, face-autism.org: Based in Ellenton, this non-profit “was created in 2009 by a team of interested professionals and parents to provide sensory friendly activities, support groups, referral for therapeutic services, structured classes, and other necessary resources.”

■ Center for Autism Resources and Education, careautism.net: Lakewood Ranch-based CARE’s mission is “to provide continued education, professional training, resources and related support to parents, professionals and other caregivers.”

■ Autism Speaks, autismspeaks.org: This national organization “aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis.”

Last modified: August 20, 2014
All rights reserved. This copyrighted material may not be published without permissions. Links are encouraged.